Dear Parents,
This Care Notebook has been developed just for you—parents with children with special health
care needs. We offer this Notebook to you with deep appreciation for the central role you play in
the life and care of your child. We hope it will serve as a guide in organizing and keeping track
of your child’s records, appointments, and other important information. The Care Notebook is
produced by the Center for Children with Special Needs and the Washington State Department
of Health, Children with Special Health Care Needs Program, with invaluable input from parents
and community professionals.
Families tell us they value having a central place to keep information they can easily take to
appointments.
“I used a paper bag for my file! It took forever to find what I needed! Now I can just turn to
the right section.”
“This way I don’t have to keep it all in my head.”
“I’d use the notebook to organize my thoughts and concerns before a doctor’s appointment.
It gave me confidence and credibility.”
Families also use the Notebook to improve communication with doctors and other health care
providers.
“Didn’t have to repeat information...I’ve taken it to all the doctors and when they ask what
happened, I just pull out the notebook and show them.”
“I use the notes as a diary. I write down what the doctor has said, word for word. This
really helps when I go to the next doctor and he wants to know what that doctor said.”
We encourage you to make this Notebook work for you! Create your own sections; remove and
rearrange pages to fit your needs; and personalize it with drawings, stickers, photographs, and
special articles and resources you’ve found helpful. The Care Notebook pages may be
downloaded and printed from http://www.cshcn.org. You can find other resources and
information for you and your family at this website.
If you have suggestions or comments about the Care Notebook, please feel free to contact Megan
Sety at (206) 987-5310 or [email protected].
Most sincerely,
Kathy Fennell
Manager
Megan Sety
Program Assistant
Care Notebook:
A Quick Guide
What is a Care Notebook?
Step 2: Look through the pages of the Care
Notebook.
A Care Notebook is an organizing tool for families who
have children with special health care needs. Use a Care
Notebook to keep track of important information about
your child’s health and care.
How can a Care Notebook help me?
In caring for your child with special health needs, you may
get information and paperwork from many sources. A
Care Notebook helps you organize the most important
information in a central place. A Care Notebook makes it
easier for you to find and share key information with
others who are part of your child’s care team.
Use your Care Notebook to:
Track changes in your child’s medicines or
treatments
List telephone numbers for health care providers
and community organizations
Prepare for appointments
File information about your child’s health history
Share new information with your child’s primary
doctor, public health or school nurse, daycare
staff, and others caring for your child
What are some helpful hints for using my
child’s Care Notebook?
Store the Care Notebook where it is easy to find.
This helps you and anyone who needs information
in your absence.
Add new information to the Care Notebook
whenever there is a change in your child’s
treatment.
Consider taking the Care Notebook with you to
appointments and hospital visits so that information
you need will be close at hand.
Which of these pages could help you keep track of
information about your child’s health or care?
Choose the pages you like. Print copies of any that
you think you will use. The Care Notebook pages
are available from the Internet at
http://www.cshcn.org. Go to “Resources” and then
choose “Care Organizing Tools.”
Step 3: Decide which information about
your child is most important to keep in the
Care Notebook.
What information do you look up often?
What information is needed by others caring for
your child?
Consider storing other information in a file drawer or
box where you can find it if needed.
Step 4: Put the Care Notebook together.
Everyone has a different way of organizing
information. The only important thing is to make it
easy for you to find again. Here are some
suggestions for supplies used to create a Care
Notebook:
3-ring notebook or large accordion envelope.
Hold papers securely.
tabbed dividers. Create your own information
sections.
pocket dividers. Store reports.
plastic pages. Store business cards and
photographs.
How do I set up my child’s Care Notebook?
Follow these steps to set up your child’s notebook:
Step 1: Gather information you already have.
Gather up any health information you already have
about your child. This may include reports from
recent doctor’s visits, immunization records, recent
summary of a hospital stay, this year’s school plan,
test results, or informational pamphlets.
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CHILDREN’S HOSPITAL AND REGIONAL MEDICAL CENTER, SEATTLE, WASHINGTON
WASHINGTON STATE DEPARTMENT OF HEALTH,
CHILDREN WITH SPECIAL HEALTH CARE NEEDS PROGRAM
Care Notebook
List of Pages
Pages to Keep Track of
Appointments and Care
Appointment Log
Diet Tracking Form
Emergency Information Form
Equipment/Supplies
Pages to Create a Care Team
and Resources List
Children’s Hospital and Regional Medical
Center
Community Health Care/Service Providers:
Medical/Dental
Growth Tracking Form
Public Health
Hospital Stay Tracking Form
Home Care
Lab Work/Tests/Procedures
Therapists
Make-a-Calendar
Early Intervention Services
Medical Bill Tracking Form
School
Medical/Surgical Highlights
Child Care
Medications
Respite Care
Notes
Pharmacy
Pages to Create a Care Summary: Abilities and
Special Care Needs
Special Transportation
Family Information
Activities of Daily Living
Family Support Resources
Care Schedule
Funding Sources
Child’s Page—Now and Later
Alphabet Soup Acronym Index
Communication
Coping/Stress Tolerance
Mobility
Nutrition
Respiratory
Rest/Sleep
Social/Play
Transitions—Looking Ahead
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CHILDREN’S HOSPITAL AND REGIONAL MEDICAL CENTER, SEATTLE, WASHINGTON
WASHINGTON STATE DEPARTMENT OF HEALTH,
CHILDREN WITH SPECIAL HEALTH CARE NEEDS PROGRAM
Family Information
• Child’s Name:_______________________________ Nickname:_____________________________
Date of Birth:____________________ Social Security Number:______________________________
Diagnosis:________________________________________________________________________
Blood Type:______________________________________________________________________
Legal Guardian:___________________________________________________________________
Address: ______________________________________ Phone:____________________________
______________________________________
Family Members
• Mother’s Name:___________________________________________________________________
Social Security Number:______________________________
Address:_________________________________________________________________________
Daytime Phone:_____________________________ Evening Phone:_________________________
• Father’s Name:____________________________________________________________________
Social Security Number:______________________________
Address:_________________________________________________________________________
Daytime Phone:_____________________________ Evening Phone:_________________________
• Sibling’s Name:________________________ Age:_____ Name:___________________ Age:_____
• Sibling’s Name:________________________ Age:_____ Name:___________________ Age:_____
• Other household members:__________________________________________________________
• Important Family Information:_________________________________________________________
________________________________________________________________________________
________________________________________________________________________________
• Language spoken at home:__________________________________________________________
Other language(s):_________________________________________________________________
Interpreter Needed? Yes:_________ No:_________
Interpreter:__________________________________ Phone:_______________________________
Emergency Contact
• Name:___________________________________________________________________________
Address:_________________________________________________________________________
Daytime Phone:____________________________ Evening Phone:__________________________
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CHILDREN’S HOSPITAL AND REGIONAL MEDICAL CENTER, SEATTLE, WASHINGTON
WASHINGTON STATE DEPARTMENT OF HEALTH,
CHILDREN WITH SPECIAL HEALTH CARE NEEDS PROGRAM
Family Support
Resources
• Parent to Parent:______________________________________________________________________
Contact Person:______________________________________________________________________
Address:____________________________________________________________________________
___________________________________________________________________________________
Phone:______________________________________ Fax:____________________________________
• Parent Group:________________________________________________________________________
Contact Person:______________________________________________________________________
Address:____________________________________________________________________________
___________________________________________________________________________________
Phone:______________________________________ Fax:____________________________________
• Religious Organization:_________________________________________________________________
Contact Person:______________________________________________________________________
Address:____________________________________________________________________________
___________________________________________________________________________________
Phone:______________________________________ Fax:____________________________________
• Service Organization:__________________________________________________________________
Contact Person:______________________________________________________________________
Address:____________________________________________________________________________
___________________________________________________________________________________
Phone:______________________________________ Fax:____________________________________
• Counseling Services:__________________________________________________________________
Contact Person:______________________________________________________________________
Address:____________________________________________________________________________
___________________________________________________________________________________
Phone:______________________________________ Fax:____________________________________
(continued)
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CHILDREN’S HOSPITAL AND REGIONAL MEDICAL CENTER, SEATTLE, WASHINGTON
WASHINGTON STATE DEPARTMENT OF HEALTH,
CHILDREN WITH SPECIAL HEALTH CARE NEEDS PROGRAM
Family Support
Resources
• Division of Developmental Disabilities:_____________________________________________________
Contact Person:______________________________________________________________________
Address:____________________________________________________________________________
___________________________________________________________________________________
Phone:_____________________________________ Fax:____________________________________
• Other:______________________________________________________________________________
Contact Person:______________________________________________________________________
Address:____________________________________________________________________________
___________________________________________________________________________________
Phone:_____________________________________ Fax:____________________________________
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CHILDREN’S HOSPITAL AND REGIONAL MEDICAL CENTER, SEATTLE, WASHINGTON
WASHINGTON STATE DEPARTMENT OF HEALTH,
CHILDREN WITH SPECIAL HEALTH CARE NEEDS PROGRAM
Funding Sources
• Insurance Name:______________________________________________________________________
Policy Number:_______________________________________________________________________
Contact Person / Title:__________________________________________________________________
Address:____________________________________________________________________________
___________________________________________________________________________________
Phone:_____________________________________ Fax:_____________________________________
• Insurance Name:______________________________________________________________________
Policy Number:_______________________________________________________________________
Contact Person / Title:__________________________________________________________________
Address:____________________________________________________________________________
___________________________________________________________________________________
Phone:_____________________________________ Fax:_____________________________________
• Insurance Name:_______________________________________________
Number:____________________________________________________________________________
Contact Person / Title:__________________________________________________________________
Address:____________________________________________________________________________
___________________________________________________________________________________
Phone:_____________________________________ Fax:_____________________________________
• Supplemental Security Income (SSI):______________________________________________________
Contact Person / Title:__________________________________________________________________
Address:____________________________________________________________________________
___________________________________________________________________________________
Phone:_____________________________________ Fax:_____________________________________
(continued)
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CHILDREN’S HOSPITAL AND REGIONAL MEDICAL CENTER, SEATTLE, WASHINGTON
WASHINGTON STATE DEPARTMENT OF HEALTH,
CHILDREN WITH SPECIAL HEALTH CARE NEEDS PROGRAM
Funding Sources
• Other:______________________________________________________
Contact Person / Title:__________________________________________________________________
Address:____________________________________________________________________________
___________________________________________________________________________________
Phone:_____________________________________ Fax:_____________________________________
• Other:______________________________________________________________________________
Contact Person / Title:__________________________________________________________________
Address:____________________________________________________________________________
___________________________________________________________________________________
Phone:_____________________________________ Fax:_____________________________________
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CHILDREN’S HOSPITAL AND REGIONAL MEDICAL CENTER, SEATTLE, WASHINGTON
WASHINGTON STATE DEPARTMENT OF HEALTH,
CHILDREN WITH SPECIAL HEALTH CARE NEEDS PROGRAM
Children’s Hospital and
Regional Medical Center
4800 Sand Point Way NE
Seattle, WA 98105
Hospital Operator (206) 987-2000 or 1-866-987-2000
Resource Line (206) 987-2500 or 1-866-987-2500
Emergency Room (206) 987-2222
Medical Record Number:___________________________________________________
• CHRMC Clinic:____________________________________________________________________
Date of First Visit:___________________________________________
Physician:________________________________________________________________________
Contact Person / Title:______________________________________________________________
Phone:____________________________________ Fax:__________________________________
• CHRMC Clinic:_______________________________________________________________
Date of First Visit:___________________________________________
Physician:________________________________________________________________________
Contact Person / Title:______________________________________________________________
Phone:____________________________________ Fax:__________________________________
• CHRMC Clinic:_______________________________________________________________
Date of First Visit:___________________________________________
Physician:________________________________________________________________________
Contact Person / Title:______________________________________________________________
Phone:____________________________________ Fax:__________________________________
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CHILDREN’S HOSPITAL AND REGIONAL MEDICAL CENTER, SEATTLE, WASHINGTON
WASHINGTON STATE DEPARTMENT OF HEALTH,
CHILDREN WITH SPECIAL HEALTH CARE NEEDS PROGRAM
Medical / Dental
Community Health Care Providers
• Primary / Community Care Provider:______________________________________________________
Date of First Visit:_____________________________________________________________________
Office Nurse:_________________________________________________________________________
Address:____________________________________________________________________________
___________________________________________________________________________________
Phone:____________________________________ Fax:______________________________________
• Community Hospital:___________________________________________________________________
Medical Record Number:_______________________________________________________________
Address:____________________________________________________________________________
___________________________________________________________________________________
Phone:____________________________________ Fax:______________________________________
• Community Specialty Care Provider:______________________________________________________
Date of First Visit:_____________________________________________________________________
Address:____________________________________________________________________________
___________________________________________________________________________________
Phone:____________________________________ Fax:______________________________________
• Community Specialty Care Provider:______________________________________________________
Date of First Visit:_____________________________________________________________________
Address:____________________________________________________________________________
___________________________________________________________________________________
Phone:____________________________________ Fax:______________________________________
• Dentist / Orthodontist:__________________________________________________________________
Date of First Visit:_____________________________________________________________________
Address:____________________________________________________________________________
___________________________________________________________________________________
Phone:____________________________________ Fax:______________________________________
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CHILDREN’S HOSPITAL AND REGIONAL MEDICAL CENTER, SEATTLE, WASHINGTON
WASHINGTON STATE DEPARTMENT OF HEALTH,
CHILDREN WITH SPECIAL HEALTH CARE NEEDS PROGRAM
Public Health
Community Health Care / Service Providers
• Public Health Department:______________________________________________________________
Address:____________________________________________________________________________
___________________________________________________________________________________
Phone:____________________________________ Fax:______________________________________
• Public Health Nurse:___________________________________________________________________
Phone:____________________________________ Date of First Visit:________________________
• Nutritionist:__________________________________________________________________________
Phone:____________________________________ Date of First Visit:________________________
• Social Worker:________________________________________________________________________
Phone:____________________________________ Date of First Visit:________________________
• Other:______________________________________________________________________________
Phone:____________________________________ Date of First Visit:________________________
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CHILDREN’S HOSPITAL AND REGIONAL MEDICAL CENTER, SEATTLE, WASHINGTON
WASHINGTON STATE DEPARTMENT OF HEALTH,
CHILDREN WITH SPECIAL HEALTH CARE NEEDS PROGRAM
Home Care
Community Health Care / Service Providers
• Home Nursing Agency:_________________________________________________________________
Start Date:_________________________________________________
Contact Person:______________________________________________________________________
Address:____________________________________________________________________________
___________________________________________________________________________________
Phone:______________________________________ Fax:____________________________________
• Home Nursing Agency:_________________________________________________________________
Start Date:_________________________________________________
Contact Person:______________________________________________________________________
Address:____________________________________________________________________________
___________________________________________________________________________________
Phone:______________________________________ Fax:____________________________________
• Home Nursing Agency:_________________________________________________________________
Start Date:_________________________________________________
Contact Person:______________________________________________________________________
Address:____________________________________________________________________________
___________________________________________________________________________________
Phone:______________________________________ Fax:____________________________________
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CHILDREN’S HOSPITAL AND REGIONAL MEDICAL CENTER, SEATTLE, WASHINGTON
WASHINGTON STATE DEPARTMENT OF HEALTH,
CHILDREN WITH SPECIAL HEALTH CARE NEEDS PROGRAM
Therapists
Community Health Care / Service Providers
Therapists:
• Occupational Therapist (OT):_________________________________________________________
Start Date:_________________________________________________
Agency:_________________________________________________________________________
Address:_________________________________________________________________________
________________________________________________________________________________
Phone:__________________________________ Fax:____________________________________
• Physical Therapist (PT):_____________________________________________________________
Start Date:_________________________________________________
Agency:_________________________________________________________________________
Address:_________________________________________________________________________
________________________________________________________________________________
Phone:__________________________________ Fax:____________________________________
• Speech-Language Pathologist:_______________________________________________________
Start Date:_________________________________________________
Agency:_________________________________________________________________________
Address:_________________________________________________________________________
________________________________________________________________________________
Phone:__________________________________ Fax:____________________________________
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CHILDREN’S HOSPITAL AND REGIONAL MEDICAL CENTER, SEATTLE, WASHINGTON
WASHINGTON STATE DEPARTMENT OF HEALTH,
CHILDREN WITH SPECIAL HEALTH CARE NEEDS PROGRAM
Early Intervention Services
Community Health Care / Service Providers
• Developmental Center:_________________________________________________________________
Start Date:_________________________________________________
Contact Person:______________________________________________________________________
Address:____________________________________________________________________________
___________________________________________________________________________________
Phone:____________________________________ Fax:______________________________________
• Family Resources Coordinator:__________________________________________________________
Start Date:___________________________________________________________________________
Agency:_____________________________________________________________________________
Address:____________________________________________________________________________
___________________________________________________________________________________
Phone:____________________________________ Fax:______________________________________
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CHILDREN’S HOSPITAL AND REGIONAL MEDICAL CENTER, SEATTLE, WASHINGTON
WASHINGTON STATE DEPARTMENT OF HEALTH,
CHILDREN WITH SPECIAL HEALTH CARE NEEDS PROGRAM
School
Community Health Care / Service Providers
• School / Preschool:____________________________________________________________________
Start Date:_________________________________________________
Address:____________________________________________________________________________
___________________________________________________________________________________
Phone:_____________________________________ Fax:_____________________________________
• School Nurse:________________________________________________________________________
Phone:_____________________________________ Fax:_____________________________________
• Contact Person / Title:_________________________________________________________________
Phone:_____________________________________ Fax:_____________________________________
• Contact Person / Title:_________________________________________________________________
Phone:_____________________________________ Fax:_____________________________________
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CHILDREN’S HOSPITAL AND REGIONAL MEDICAL CENTER, SEATTLE, WASHINGTON
WASHINGTON STATE DEPARTMENT OF HEALTH,
CHILDREN WITH SPECIAL HEALTH CARE NEEDS PROGRAM
Child Care
Community Health Care / Service Providers
• Child Care Provider:___________________________________________________________________
Start Date:_________________________________________________
Contact Person:______________________________________________________________________
Address:____________________________________________________________________________
___________________________________________________________________________________
Phone:_____________________________________ Fax:_____________________________________
• Child Care Provider:___________________________________________________________________
Start Date:_________________________________________________
Contact Person:______________________________________________________________________
Address:____________________________________________________________________________
___________________________________________________________________________________
Phone:_____________________________________ Fax:_____________________________________
• Child Care Provider:___________________________________________________________________
Start Date:_________________________________________________
Contact Person:______________________________________________________________________
Address:____________________________________________________________________________
___________________________________________________________________________________
Phone:_____________________________________ Fax:_____________________________________
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CHILDREN’S HOSPITAL AND REGIONAL MEDICAL CENTER, SEATTLE, WASHINGTON
WASHINGTON STATE DEPARTMENT OF HEALTH,
CHILDREN WITH SPECIAL HEALTH CARE NEEDS PROGRAM
Respite Care
Community Health Care / Service Providers
• Respite Care Provider:_________________________________________________________________
Start Date:_________________________________________________
Contact Person:______________________________________________________________________
Agency:_____________________________________________________________________________
Address:____________________________________________________________________________
___________________________________________________________________________________
Phone:_____________________________________ Fax:_____________________________________
• Respite Care Provider:_________________________________________________________________
Start Date:_________________________________________________
Contact Person:______________________________________________________________________
Agency:_____________________________________________________________________________
Address:____________________________________________________________________________
___________________________________________________________________________________
Phone:_____________________________________ Fax:_____________________________________
• Respite Care Provider:_________________________________________________________________
Start Date:_________________________________________________
Contact Person:______________________________________________________________________
Agency:_____________________________________________________________________________
Address:____________________________________________________________________________
___________________________________________________________________________________
Phone:_____________________________________ Fax:_____________________________________
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CHILDREN’S HOSPITAL AND REGIONAL MEDICAL CENTER, SEATTLE, WASHINGTON
WASHINGTON STATE DEPARTMENT OF HEALTH,
CHILDREN WITH SPECIAL HEALTH CARE NEEDS PROGRAM
Pharmacy
Community Health Care / Service Providers
• Pharmacy:___________________________________________________________________________
Contact Person:______________________________________________________________________
Address:____________________________________________________________________________
___________________________________________________________________________________
Phone:______________________________________ Fax:____________________________________
• Pharmacy:___________________________________________________________________________
Contact Person:______________________________________________________________________
Address:____________________________________________________________________________
___________________________________________________________________________________
Phone:______________________________________ Fax:____________________________________
• Pharmacy:___________________________________________________________________________
Contact Person:______________________________________________________________________
Address:____________________________________________________________________________
___________________________________________________________________________________
Phone:______________________________________ Fax:____________________________________
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CHILDREN’S HOSPITAL AND REGIONAL MEDICAL CENTER, SEATTLE, WASHINGTON
WASHINGTON STATE DEPARTMENT OF HEALTH,
CHILDREN WITH SPECIAL HEALTH CARE NEEDS PROGRAM
Special Transportation
Community Health Care / Service Providers
• Transportation (to and from medical / therapy appointments)
Contact Person:______________________________________________________________________
Agency:_____________________________________________________________________________
Address:____________________________________________________________________________
___________________________________________________________________________________
Phone:______________________________________ Fax:____________________________________
• Transportation (to and from medical / therapy appointments)
Contact Person:______________________________________________________________________
Agency:_____________________________________________________________________________
Address:____________________________________________________________________________
___________________________________________________________________________________
Phone:______________________________________ Fax:____________________________________
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CHILDREN’S HOSPITAL AND REGIONAL MEDICAL CENTER, SEATTLE, WASHINGTON
WASHINGTON STATE DEPARTMENT OF HEALTH,
CHILDREN WITH SPECIAL HEALTH CARE NEEDS PROGRAM
Alphabet Soup
Acronym Index
The following index lists a wide variety of acronyms used by professionals who work with families.
ACCH
Association for the Care of Children’s Health
ADA
Americans with Disabilities Act
ADD
Attention Deficit Disorder
ADHD
Attention Deficit Hyperactivity Disorder
AFDC
Aid to Families with Dependent Children
AIDS
Acquired Immune Deficiency Syndrome
ARC
The Arc: Advocates for the Rights of Citizens with Developmental Disabilities and their families
ARNP
Advanced Registered Nurse Practitioner
BIA
Bureau of Indian Affairs
BD
Behaviorally Disabled
CAP
Community Alternative Program (Medicaid), Community Action Program (Dept. of Community
Development), Client Assistance Program (Division of Vocational Rehabilitation)
CD
Communication Disorders
CDS
Communication Disorders Specialist
CEC
Council for Exceptional Children
CFR
Code of Federal Regulations
CHAP
Children Have a Potential (Air Force assistance program)
CHDD
Center on Human Development and Disability at the University of Washington
CHRMC
Children’s Hospital and Regional Medical Center
CP
Cerebral Palsy
CPS
Child Protective Services
CSHCN
Children with Special Health Care Needs
CSO
Community Service Office, DSHS
DCD
Department of Community Development
DCFS
Division of Children and Family Services
DD
Developmentally Disabled
DDD
Division of Developmental Disabilities, DSHS
DDPC
Developmental Disabilities Planning Council
DH
Developmentally Handicapped
DMH
Division of Mental Health
DOH
Department of Health
DSB
Department of Services for the Blind
DSHS
Department of Social and Health Services
DVR
Division of Vocational Rehabilitation
ECDAW
Early Childhood Development Association of Washington
ECEAP
Early Childhood Education and Assistance Program
ED
Emotionally Disturbed
EEG
Electroencephalogram
EEU
Experimental Education Unit, CHDD
EFMP
Exceptional Family Member Program (helps military families locate to areas with services)
EKG
Electrocardiogram
EPSDT
Early Periodic Screening, Diagnosis, and Treatment
ESD
Educational Service District
FAPE
Free Appropriate Public Education
FRC
Family Resources Coordinator
HHS
Health and Human Services
HI
Health Impaired or Hearing Impaired
HMO
Health Maintenance Organization
HO
Healthy Options, DSHS, Medicaid Managed Care Program
HOH
Hard of Hearing
ICC
Interagency Coordinating Council; county ICC and state ICC.
IDEA
Individuals with Disabilities Education Act
IEP
Individual Education Plan
IFSP
Individual Family Service Plan
(continued)
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CHILDREN’S HOSPITAL AND REGIONAL MEDICAL CENTER, SEATTLE, WASHINGTON
WASHINGTON STATE DEPARTMENT OF HEALTH,
CHILDREN WITH SPECIAL HEALTH CARE NEEDS PROGRAM
Alphabet Soup
Acronym Index
I&R
ISP
LD
LDA
LEA
LICWAC
LRE
MAA
MCH
MD
MDT
MH
MR
MS
NICU
OCR
OFM
OI
OSEP
OSERS
OSPI
OT
OTR
PAVE
P&A
PFTH
PHN
PL
PT
PTA
RCW
RN
RPT
SBD
SEA
SEAC
SEPAC
SLD
SSA
SSI
STOMP
SW
TAPP
TASH
TBI
TDD
TTY
VI
WAC
WACD
WIC
WSMC
WSSB
Information and Referral
Individual Service Plan
Learning Disabled
Learning Disabilities Association
Local Education Agency
Local Indian Child Welfare Advocacy Board
Least Restrictive Environment
Medical Assistance Administration
Maternal and Child Health
Medical Doctor
Multi-Disciplinary Team
Multiply Handicapped
Mentally Retarded
Multiple Sclerosis
Neonatal Intensive Care Unit
Office of Civil Rights
Office of Financial Management
Orthopedically Impaired
Office of Special Education Programs
Office of Special Education and Rehabilitation Services
Office of Superintendent of Public Instruction
Occupational Therapy/Therapist
Licensed and Registered Occupational Therapist
Parents Are Vital in Education
Protection and Advocacy
Program for the Handicapped (military program)
Public Health Nurse
Public Law
Physical Therapy/Therapist
Parent Teacher Association
Revised Code of Washington (state law)
Registered Nurse
Registered Physical Therapist
Seriously Behaviorally Disabled
State Education Agency
Special Education Advisory Council
Special Education Parent/Professional Advisory Council
Specific Learning Disability
Social Security Administration
Social Security Income
Specialized Training of Military Parents
Social Work/Worker
Technical Assistance for Parents and Professionals
The Association for Persons with Severe Handicaps
Traumatic Brain Injury
Telecommunication Device for the Deaf
Telecommunication Device for Deaf, Hearing Impaired, and Speech Impaired Persons
Visually Impaired
Washington Administrative Code
Washington Association for Citizens with Disabilities
Women, Infants and Children Supplemental Food Program
Washington State Migrant Council
Washington State School for the Blind
This list was adapted from and used with permission of PAVE.
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CHILDREN’S HOSPITAL AND REGIONAL MEDICAL CENTER, SEATTLE, WASHINGTON
WASHINGTON STATE DEPARTMENT OF HEALTH,
CHILDREN WITH SPECIAL HEALTH CARE NEEDS PROGRAM
Medical / Surgical
Highlights
DATE
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PROCEDURE
RESULT
COMMENTS
CHILDREN’S HOSPITAL AND REGIONAL MEDICAL CENTER, SEATTLE, WASHINGTON
WASHINGTON STATE DEPARTMENT OF HEALTH,
CHILDREN WITH SPECIAL HEALTH CARE NEEDS PROGRAM
Lab Work /
Tests / Procedures
DATE
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TEST
RESULT
COMMENTS
CHILDREN’S HOSPITAL AND REGIONAL MEDICAL CENTER, SEATTLE, WASHINGTON
WASHINGTON STATE DEPARTMENT OF HEALTH,
CHILDREN WITH SPECIAL HEALTH CARE NEEDS PROGRAM
Equipment / Supplies
• Name of Equipment:___________________________________________________________________
Description (brand name, size, etc.):______________________________________________________
___________________________________________________________________________________
Date obtained:___________________ Supplier:_____________________________________________
Contact Person:____________________________________ Phone:____________________________
• Name of Equipment:___________________________________________________________________
Description (brand name, size, etc.):______________________________________________________
___________________________________________________________________________________
Date obtained:___________________ Supplier:_____________________________________________
Contact Person:____________________________________ Phone:____________________________
• Name of Equipment:___________________________________________________________________
Description (brand name, size, etc.):______________________________________________________
___________________________________________________________________________________
Date obtained:___________________ Supplier:_____________________________________________
Contact Person:____________________________________ Phone:____________________________
• Name of Equipment:___________________________________________________________________
Description (brand name, size, etc.):______________________________________________________
___________________________________________________________________________________
Date obtained:___________________ Supplier:_____________________________________________
Contact Person:____________________________________ Phone:____________________________
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CHILDREN’S HOSPITAL AND REGIONAL MEDICAL CENTER, SEATTLE, WASHINGTON
WASHINGTON STATE DEPARTMENT OF HEALTH,
CHILDREN WITH SPECIAL HEALTH CARE NEEDS PROGRAM
Appointment
Log
DATE
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PROVIDER
REASON SEEN /
CARE PROVIDED
NEXT
APPOINTMENT
CHILDREN’S HOSPITAL AND REGIONAL MEDICAL CENTER, SEATTLE, WASHINGTON
WASHINGTON STATE DEPARTMENT OF HEALTH,
CHILDREN WITH SPECIAL HEALTH CARE NEEDS PROGRAM
Care
Schedule
TIME
CARE
Morning
Afternoon
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CHILDREN’S HOSPITAL AND REGIONAL MEDICAL CENTER, SEATTLE, WASHINGTON
WASHINGTON STATE DEPARTMENT OF HEALTH,
CHILDREN WITH SPECIAL HEALTH CARE NEEDS PROGRAM
Care
Schedule
TIME
CARE
Evening
Night
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CHILDREN’S HOSPITAL AND REGIONAL MEDICAL CENTER, SEATTLE, WASHINGTON
WASHINGTON STATE DEPARTMENT OF HEALTH,
CHILDREN WITH SPECIAL HEALTH CARE NEEDS PROGRAM
Growth
Tracking Form
DATE
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HEIGHT
WEIGHT
HEAD CIRCUMFERENCE
CHECKED BY
CHILDREN’S HOSPITAL AND REGIONAL MEDICAL CENTER, SEATTLE, WASHINGTON
WASHINGTON STATE DEPARTMENT OF HEALTH,
CHILDREN WITH SPECIAL HEALTH CARE NEEDS PROGRAM
Care Summary:
Activities of Daily Living
Use this page to talk about your child’s abilities to feed him or herself, bathe, get dressed, use the
bathroom, comb hair, brush teeth, etc. Describe what your child can do by him or herself and any help or
equipment your child uses for these activities. Describe any special routines your child has for bathtime,
getting dressed, etc.
Date: ______________________________
_____________________________________________________________________________________
_____________________________________________________________________________________
_____________________________________________________________________________________
_____________________________________________________________________________________
_____________________________________________________________________________________
_____________________________________________________________________________________
_____________________________________________________________________________________
_____________________________________________________________________________________
_____________________________________________________________________________________
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CARE NOTEBOOK
Printer 6/03
CHILDREN’S HOSPITAL AND REGIONAL MEDICAL CENTER, SEATTLE, WASHINGTON
WASHINGTON STATE DEPARTMENT OF HEALTH,
CHILDREN WITH SPECIAL HEALTH CARE NEEDS PROGRAM
Care Summary:
Nutrition
Use this page to talk about your child’s nutritional needs. Describe foods and any nutritional formulas your
child takes, any food allergies or restrictions, and any special feeding techniques, precautions, or
equipment used for feedings. Describe any special mealtime routines your family and child have.
Date: ______________________________
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CARE NOTEBOOK
Printer 6/03
CHILDREN’S HOSPITAL AND REGIONAL MEDICAL CENTER, SEATTLE, WASHINGTON
WASHINGTON STATE DEPARTMENT OF HEALTH,
CHILDREN WITH SPECIAL HEALTH CARE NEEDS PROGRAM
Care Summary:
Respiratory
Use this page to talk about your child’s respiratory care needs. Describe the care or treatments your child
needs and any special techniques or precautions you use when giving care. Include any special routines
your child has for respiratory care.
Date: ______________________________
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CARE NOTEBOOK
Printer 6/03
CHILDREN’S HOSPITAL AND REGIONAL MEDICAL CENTER, SEATTLE, WASHINGTON
WASHINGTON STATE DEPARTMENT OF HEALTH,
CHILDREN WITH SPECIAL HEALTH CARE NEEDS PROGRAM
Care Summary:
Communication
Use this page to talk about your child’s ability to communicate and to understand others. Describe how your
child communicates. Include sign language words, gestures, or any equipment or help your child uses to
communicate or understand others. Include any special words your family and child use to describe things.
Date: ______________________________
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CARE NOTEBOOK
Printer 6/03
CHILDREN’S HOSPITAL AND REGIONAL MEDICAL CENTER, SEATTLE, WASHINGTON
WASHINGTON STATE DEPARTMENT OF HEALTH,
CHILDREN WITH SPECIAL HEALTH CARE NEEDS PROGRAM
Care Summary:
Mobility
Use this page to talk about your child’s ability to get around. Describe how your child gets around. Include
what your child can do by him or herself and any help or equipment your child uses to get around. Describe
any activity limits and any special routines your child has for transfers, pressure releases, positioning, etc.
Date: ______________________________
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CARE NOTEBOOK
Printer 6/03
CHILDREN’S HOSPITAL AND REGIONAL MEDICAL CENTER, SEATTLE, WASHINGTON
WASHINGTON STATE DEPARTMENT OF HEALTH,
CHILDREN WITH SPECIAL HEALTH CARE NEEDS PROGRAM
Care Summary:
Rest / Sleep
Use this page to talk about your child’s ability to get to sleep and to sleep through the night. Describe your
child’s bedtime routine and any security or comfort objects your child uses.
Date: ______________________________
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CARE NOTEBOOK
Printer 6/03
CHILDREN’S HOSPITAL AND REGIONAL MEDICAL CENTER, SEATTLE, WASHINGTON
WASHINGTON STATE DEPARTMENT OF HEALTH,
CHILDREN WITH SPECIAL HEALTH CARE NEEDS PROGRAM
Care Summary:
Social / Play
Use this page to talk about your child’s ability to get along with others. Describe how your child shows
affection, shares feelings, or plays with other children. Describe what works best to help your child get
along or cooperate with others. Describe your child’s favorite things to do. Include any special family
activities or customs that are important.
Date: ______________________________
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CARE NOTEBOOK
Printer 6/03
CHILDREN’S HOSPITAL AND REGIONAL MEDICAL CENTER, SEATTLE, WASHINGTON
WASHINGTON STATE DEPARTMENT OF HEALTH,
CHILDREN WITH SPECIAL HEALTH CARE NEEDS PROGRAM
Care Summary:
Coping / Stress Tolerance
Use this page to talk about how your child copes with stress. Stressful events might include new people or
situations, a hospital stay, or procedures such as having blood drawn. Describe what things upset your
child and what your child does when upset or when he or she has “had enough”. Describe your child’s way
of asking for help and things to do or say to comfort your child.
Date: ______________________________
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CARE NOTEBOOK
Printer 6/03
CHILDREN’S HOSPITAL AND REGIONAL MEDICAL CENTER, SEATTLE, WASHINGTON
WASHINGTON STATE DEPARTMENT OF HEALTH,
CHILDREN WITH SPECIAL HEALTH CARE NEEDS PROGRAM
Care Summary:
Transitions—Looking Ahead
Your child and family will experience many transitions, small and large, over the years. Three predictable
transitions occur: when your child reaches school age, when he or she approaches adolescence, and
when your child moves from adolescence into adulthood. Other transitions may involve moving into new
programs, working with new agencies and care providers, or making new friends. Transitions involve
changes: adding new expectations, responsibilities, or resources, and letting go of others.
It’s not always easy to think about the future. There may be many things, including what has to be done
today, that keep you from looking ahead. It may be helpful to take some time to jot down a few ideas about
your child’s and family’s future. You might start by thinking about your child’s and family’s strengths. How
can these strengths help you plan for “what’s next” and for reaching long term goals? What are your
dreams and your fears about your child’s and family’s future?
Date: ______________________________
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Developed in partnership with staff from the Adolescent Health and Transition Project
CARE NOTEBOOK
Printer 6/03
CHILDREN’S HOSPITAL AND REGIONAL MEDICAL CENTER, SEATTLE, WASHINGTON
WASHINGTON STATE DEPARTMENT OF HEALTH,
CHILDREN WITH SPECIAL HEALTH CARE NEEDS PROGRAM
Care Summary:
Child’s Page—Now and Later
Use this page for your child’s words and thoughts about his or her life now as well as later. What are your
child’s dreams? What does he or she do well now that might give direction for life later? What does your
child want to be when he or she grows up?
Date: ______________________________
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Developed in partnership with staff from the Adolescent Health and Transition Project
CARE NOTEBOOK
Printer 6/03
CHILDREN’S HOSPITAL AND REGIONAL MEDICAL CENTER, SEATTLE, WASHINGTON
WASHINGTON STATE DEPARTMENT OF HEALTH,
CHILDREN WITH SPECIAL HEALTH CARE NEEDS PROGRAM
Notes
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CARE NOTEBOOK
Printer 6/03
CHILDREN’S HOSPITAL AND REGIONAL MEDICAL CENTER, SEATTLE, WASHINGTON
WASHINGTON STATE DEPARTMENT OF HEALTH,
CHILDREN WITH SPECIAL HEALTH CARE NEEDS PROGRAM
Medical Bill
Tracking Form
DATE
CARE NOTEBOOK
Printed 6/03
PROVIDER
COST
INSURANCE
PAID
DATE PAID
FAMILY OWES
DATE PAID
CHILDREN’S HOSPITAL AND REGIONAL MEDICAL CENTER, SEATTLE, WASHINGTON
WASHINGTON STATE DEPARTMENT OF HEALTH,
CHILDREN WITH SPECIAL HEALTH CARE NEEDS PROGRAM
Hospital Stay
Tracking Form
DATE
CARE NOTEBOOK
Printed 6/03
HOSPITAL
REASON
NOTES
CHILDREN’S HOSPITAL AND REGIONAL MEDICAL CENTER, SEATTLE, WASHINGTON
WASHINGTON STATE DEPARTMENT OF HEALTH,
CHILDREN WITH SPECIAL HEALTH CARE NEEDS PROGRAM
Medications
Allergies: _____________________________________________________________________________________________________________
Pharmacy: ________________________________________________________________________ Phone: _____________________________
DATE STARTED
CARE NOTEBOOK
Printed 6/03
DATE STOPPED
MEDICATION
DOSE / ROUTE
TIME GIVEN
PRESCRIBED BY
CHILDREN’S HOSPITAL AND REGIONAL MEDICAL CENTER, SEATTLE, WASHINGTON
WASHINGTON STATE DEPARTMENT OF HEALTH,
CHILDREN WITH SPECIAL HEALTH CARE NEEDS PROGRAM
Diet
Tracking Form
DATE
SUNDAY
MONDAY
TUESDAY
WEDNESDAY
THURSDAY
FRIDAY
SATURDAY
Tube Feeding
Breakfast
Lunch
Dinner
Snacks
Notes
CARE NOTEBOOK
Printed 6/03
CHILDREN’S HOSPITAL AND REGIONAL MEDICAL CENTER, SEATTLE, WASHINGTON
WASHINGTON STATE DEPARTMENT OF HEALTH,
CHILDREN WITH SPECIAL HEALTH CARE NEEDS PROGRAM
“MAKE-A-CALENDAR”
SUNDAY
CARE NOTEBOOK
Printed 6/03
MONDAY
TUESDAY
Month___________ Year _________
WEDNESDAY
THURSDAY
FRIDAY
SATURDAY
CHILDREN’S HOSPITAL AND REGIONAL MEDICAL CENTER, SEATTLE, WASHINGTON
WASHINGTON STATE DEPARTMENT OF HEALTH,
CHILDREN WITH SPECIAL HEALTH CARE NEEDS PROGRAM